A Woman's Journey With Rare Disease

EHR’s: Why I Care & Why You Should

“This is a boring subject. I don’t see why anyone would care about something so frustrating & mundane.”

“All I know is that it annoys the hell out of my doctors. They don’t make eye contact with me anymore, they’re so buried in their computer or iPad.”

I’ve heard every single one of these phrases when I’ve just gone around asking friends & family & even other people how much if anything they know about Electronic Health Records (EHR)’s & what is actually in them.

I wouldn’t even call them excuses, because most of them are actually true. The article I just linked to from WebMD shows some very good points as to why we should care about our records & who can access them.

But I’m going to speak very simply about why we should care outside of just privacy factors. Inaccuracies in our health record can lead to problems with billing offices, insurance claims, & even potentially result in medical errors & wrong treatments.

I don’t deny we are all human & make typos & errors (this includes health professionals), but this is one area where such errors could be completely disastrous.

Some of them could be completely avoided with having the health system review our records in real-time & make sure they are accurate. Too few systems & professionals take this approach.

I’ve reviewed certain notes & files of mine & even after I’ve handed people my phone with the correct pronunciation & spelling of my diseases they still get it in the system wrong. Often with the wrong billing codes. I’m surprised that I haven’t had issues with coverage as a result.

Yet all of the incorrect terms at times have appeared in my medical record even when I’ve given them all the proper information & correct spellings.

Compound this with the fact that these systems typically do not communicate to other outside health systems. This poses a problem for those of us with rare & chronic illnesses who have to see specialists outside our local radius.

I often joke I am my own electronic health record because anytime I get a blood draw or a test done, I get copies so I can pass them along to my transplant center or local doctors or vice versa. It’s a gigantic pain, but a necessity to keep everyone on the same page.

My car accident really drove home how horrible communication can be within the same health system. I was discharged from the trauma center after 4 days. I then had to be readmitted that same evening to a hospital in the same system closer to my house.

The trauma center put my information in under a different medical record number than what already existed. This caused problems for the other hospital since they could find their records, but no records from the trauma center.

It eventually righted, but this could have caused so many issues that could have impeded my recovery, for a very simple & stupid reason.

We have a long way to go with solving issues, but a few strides are being made. I had a few friends from a healthcare tweet chat invite me to participate in a Blab on the subject.

Very creative brainstorming to solve such issues is taking place. Yet everyone has to care about it, even if seems like it is a less than interesting subject.

(I do empathize with the growing pains with these systems where doctors & professionals are concerned. ZdoggMD has a great video that outlines some of the common gripes about how obtuse these systems can get & take doctors & other professionals away from their jobs.)

While the patient portals are still a bit clunky & in their infancy for some it’s a better solution for addressing some of these types of issues than nothing. It’s at least a starting point. In mine I can at least send secure messages to my transplant team & attach & upload test results which I couldn’t do before. I still can’t do it with my local health system yet. This at least avoids me having to carry a 50 pound binder to every appointment with me to whatever doctor I see.

I will say my transplant center & local docs work well to communicate with each other & share information. Most of my problems with such communication occur with labs & other facilities I may need to communicate with which is an issue because all of my team both local & transplant center need that information. I doubt they’d get it if it wasn’t for me.

I just wish the designers of these systems would actively engage people with chronic conditions & rare diseases, as well as a few people with great health to provide a balance in testing before they roll these out to the health systems. They should also engage front line professionals who have to use these on a daily basis too for the same reason. Instead they hold all of this technology so close to the vest that it has to be debugged by everyone the hard way.

Post navigation

2 thoughts on “EHR’s: Why I Care & Why You Should”

Hey Nikki, another great blog post. Thanks for linking to our blab with Dr. Legan. Totally agree with your perspective on creative brainstorming to improve the benefits associated with EHR’s. My bias is on making them truly “work” at the point of care (also known as the patient). I believe patients must be able to see and/or review the contents about them. Knockin’ Wood 4U!

thanks Dennis & thanks for inviting me & Robin to participate to have a more rounded and global view on a subject. It’s not everyone’s cup of tea granted, but it’s something important to occasionally ask about & stay on top at the very least.